We now move on to the next debate on our agenda this afternoon, which is a debate by individual Members under Standing Order 11.21 on a paediatric rheumatology centre. I call on David Melding to move the motion.

Motion NDM6348 David Melding, Dai Lloyd, Caroline Jones, Rhun ap Iorwerth, Julie Morgan

Supported by Nick Ramsay, Angela Burns, Darren Millar, Hefin David

To propose that the National Assembly for Wales:

1. Notes that Wales is the only home nation without a specialist paediatric rheumatology centre.

2. Notes that there are an estimated 400 children in South Wales alone that are suffering with Juvenile Idiopathic Arthritis.

3. Recognises the need for a multidisciplinary paediatric rheumatology centre in Wales.

4. Notes that the Welsh Health Specialist Services Committee is undertaking a comprehensive review of paediatric specialised services in Wales.

5. Calls on the Welsh Government to support calls from Arthritis Care, the National Rheumatoid Arthritis Society and the British Society for Rheumatology for the creation of a fully dedicated multidisciplinary paediatric rheumatology centre in Wales.

Motion moved.

Thank you very much, Deputy Presiding Officer, for calling me to move this very important motion, which is proposed also by Caroline Jones, Rhun ap Iorwerth, Dai Lloyd and Julie Morgan. I’m also very grateful to those Members who have supported this motion.

I’d like to open this debate with the story of a young girl from Haverfordwest. Her name is Aimee, and some of you may have met her during the drop-in event that was organised on awareness-raising of juvenile idiopathic arthritis only two weeks ago in the Pierhead building. I’m pleased to say I think nearly half of Assembly Members attended that event. This personal account has been given by Aimee’s father, Darren:

Aimee was diagnosed with juvenile idiopathic arthritis just before her second birthday and it took us about six months to get a diagnosis. The local doctors didn’t think it was arthritis but I don’t think they knew much about arthritis in children. It took a lot of people by surprise. Aimee has to go to hospital every month—this means travelling to Cardiff, which is two hours away, a round trip of 230 miles. Once she’s had the treatment I can see a difference within a couple of days. The medical care in Cardiff has been very good and we are very grateful. However, locally it’s been disjointed and poor as there’s a massive lack of knowledge of arthritis in children. Travelling to Cardiff does put a massive strain on us. It means missing days of school and my partner has to take time off work which isn’t always easy. We’ve had to spend a week in Cardiff in the past when she needed physio as she can’t get that locally. We’ve even considered moving nearer to Cardiff on several occasions. It’s a real worry every day as our local doctors just can’t provide effective treatment for Aimee. We believe that by providing a multidisciplinary department, it would not only give a greater level of care to the children but also help raise awareness and knowledge of professionals and services outside of the Cardiff area. This would enable children across Wales to lead a childhood that is not dominated by arthritis.’

I think this is a most moving statement—the lives of a family with a young child that suffers from juvenile idiopathic arthritis. I will now refer to that as JIA. I think Darren succinctly summarises how a specialist paediatric centre would have a positive influence on services throughout Wales and therefore improve the lives of children with JIA.

When I was first approached by representatives of Arthritis Care, the National Rheumatoid Arthritis Society and the British Society for Rheumatology, who have all been doing fantastic work in raising awareness of this issue, I was surprised that such services did not already exist. It was disheartening to find out that Wales, with its 3.1 million population, is the only home nation without such a specialised service. This is in comparison to Northern Ireland with its 1.8 million population, which has one centre, and Scotland with its 5.2 million, which has two centres. England has 12 specialist paediatric rheumatology centres. I think it’s simply unacceptable that Wales has been left behind.

There are 12,000 children in the UK that suffer with JIA, and it’s estimated that 400 of these live in the south Wales region. As you can see, Members, this is not a marginal issue. An NHS England service specification paper published in 2013 states that, in NHS England, there should be one consultant paediatric rheumatologist, two nurse specialists, one physiotherapist and one occupational therapist per 1 million of the population or every 200,000 children. Currently, an experienced adult rheumatologist at the University Hospital of Wales in Cardiff, who, I may add, is about to retire in the next few years, is providing the majority of specialist paediatric rheumatology services for south Wales. So, even this makeshift provision is very fragile, given the impending retirement. However, some children from south Wales are travelling to Bristol, Birmingham and even beyond. As shown in the statement from Aimee’s family, travelling long distances for children with arthritis can be painful and stressful, and can cause disruption to education and family life.

This is an issue that the Government needs, in my view, to tackle. The succession planning should be taken forward in good time to avoid a situation of no service, and recruitment for the role would be made easier if plans are put in place to develop the service into a full tertiary provision.

JIA is a severe autoimmune condition that, if not properly treated and managed, can cause significant lifelong disabilities. Children with arthritis need access to high-quality health and support services to help limit the impact of their condition and to help them reach their true potential. According to AbbVie, the pharmaceutical research and development organisation, one of the most important factors to ensure that a child with JIA doesn’t have severe arthritis and joint damage when they’re adults is for children to receive early diagnosis and treatment. The longer arthritis has been active before treatment begins, the more difficult it is to control the disease. This is just one aspect of the problem, but early diagnosis and treatment can go as far as prolonging an arthritis sufferer’s life, it is so crucial. I believe that, with a population of over two million in south Wales alone, 400,000 of these being children, there is an overwhelming case for a specialist paediatric rheumatology centre in Wales.

Point 4 of this motion asks the Assembly to note that the Welsh Health Specialised Services Committee, WHSSC, is currently undertaking a review. The review will look into the needs of the Welsh population and assess any gaps in the provision against demands, service quality and specification. I welcome this review, and I welcome the news that upcoming meetings have been scheduled between WHSSC and the relevant organisations, such as Arthritis Care. I hope that this is a signal of progress for the development of such a centre. The looming retirement of the current rheumatologist adds a time pressure to this issue, and WHSSC’s review isn’t expected to be finalised until early 2018. However, the evidence is already clear on the need for a full multidisciplinary service. The WHSSC review could usefully look at how to implement a service that would best meet the needs of the population rather than again looking at whether Wales needs one at all. We’ve already been left behind the other parts of the UK. I believe the Government should give a firm lead and indicate that it is minded to commission this service so that Wales is not the only part of the UK without reasonable local provision.

Deputy Presiding Officer, if I may conclude with this, which is a final extract taken from Aimee’s story, again in the words of her dad:

Aimee’s condition is difficult for her. She just can’t do the same things as everyone else. At the age she is, it gets highlighted a lot. It’s little things like having a lot of time off school so she never wins the attendance awards or not being able to run about with her classmates. There’s always a constant reminder that she has arthritis.’

Deputy Presiding Officer, I believe that we can do more to improve the lives of these young children, who are already struggling with a condition that makes everyday life a challenge. I commend this motion to Assembly Members. Thank you.

I congratulate David Melding on getting this debate today, and I’m pleased to support him. As we know from the debate, arthritis isn’t just something that older people get, because I think that is often what people think. I became aware of childhood arthritis, which affects 400 children in south Wales, after being contacted by a constituent, Dawn Nyhan, and I met her and her daughter Harriet, who is now 19. She was first diagnosed with juvenile idiopathic arthritis when she was just two years old, similar to David’s constituent. As well as the more well-known effects of childhood arthritis, such as joint damage and mobility problems, which have already been mentioned today, perhaps less well-known is that 10 to 20 per cent of children develop an inflammatory eye condition that can cause blindness if not treated. So, this illness is a very severe condition if it is left untreated.

About 60 to 70 per cent of children grow out of rheumatoid arthritis, in that they don’t have ongoing disease, but they may still have to cope with ongoing problems as a result of joint damage they suffered when they were younger, and between 30 and 56 per cent of people with childhood arthritis will experience severe limitations in dexterity and mobility in adulthood.

Sadly, Harriet’s problems are ongoing, although she is determined not to let it stop her achieving. Harriet is now training to be a nurse, but she has such damage to her joints that mobility is a problem and she still has days when she can’t walk down the stairs and she’s in excruciating pain, and she never knows when her next procedure or surgery will be required.

Harriet’s mother, Dawn, said that they first noticed pain and problems moving when she was two years old. She had been an early walker but was reduced to shuffling to get around and was obviously in great pain. At first, the parents were told it was growing pains and they were passed, they felt, from pillar to post without a diagnosis. David mentioned about the importance of early diagnosis in his speech. I think that is really one of the points that we need to address today—there’s not enough knowledge among GPs of junior arthritis, and the family also found that there was no knowledge of it in A&E when they took Harriet there.

Eventually, after about five months, they had a diagnosis and, since then, they say they have had fantastic care—the problem was reaching that actual point. And, of course, it’s also important to note, as we’ve already heard, that they have the excellent care from their consultant, Jeremy Camilleri, who is also my constituent. He always does his utmost to help, but he is still an adult rheumatologist who can only dedicate a quarter of his working time to children. This motion highlights the need for a specialist, dedicated child rheumatology specialist for the population of south Wales, really, which has a population that does justify that.

In Harriet’s case, lots of physiotherapy and support, and the use of the hydro pool at UHW, literally did help to get her back on her feet. But there have been continued flare-ups of pain and swelling in Harriet’s knees and ankles throughout her school career. She’s had to spend a huge amount of her time in hospital, either to receive treatment or to have fluid drained from her joints.

She also lost a lot of school time, and I think this loss of school time is a very important issue. Her parents found it difficult to get support for learning at home, although the school, Llanishen High School, was absolutely very supportive about sending work home. But she wasn’t able to get a tutor at home, so they had to pay for private tutors to help Harriet get 10 GCSEs—three A* and seven As—despite having a very low attendance record at school and having surgery on her joints during both years of GCSE exams.

So, I really do feel that, with all the problems she’s encountered, and with such support from her parents, she has really achieved very well. She was a keen sportswoman and she captained the hockey team until she was 16, when she was told her playing days were over because of the amount of bone damage she had suffered on her knees because of the arthritis.

So, we know that there are hundreds of children with this extremely painful condition and if it’s not treated in childhood, bone damage and damaged joints are the result. While children do need the treatment in hospital, we’ve already heard about the difficulty of the long car journeys to get that treatment, and those journeys are very painful. So, I hope that the Cabinet Secretary will think of a model that can address all the issues that have been raised today and can find some way of addressing this very debilitating, very important illness, which can be prevented and can be addressed if it is diagnosed early enough. Thank you.

I’m very delighted to be able to speak in today’s debate. It must be very hard, Cabinet Secretary, because I know that money is not infinite, but, as David Melding says, this is not a marginal issue, and these young people have every right to access the quality of treatment that we would expect throughout the entire NHS. The long and the short of it is that Wales should have a multidisciplinary paediatric rheumatology service.

I also met Aimee at the event that was held last week, and had a moment of embarrassment, which I’m prepared to completely admit to. She was standing next door to someone else who was on crutches, so I kind of beelined for the person on crutches, because there was this other bright, sparky, bouncy little kid—you know, bing, bing, bing—and I thought, ‘Oh, it must be this person’, and they went, ‘No, this is Aimee’, and there she was. We had a great chat about shopping, about clothes, about getting into Cardiff town centre—really, really excited—and then her dad said to me, ‘But tomorrow she’ll probably be in a wheelchair.’ That really brought it home to me, and I thought, ‘Oh, my gosh’. What a thing to cope with when you’re only—I think she’s seven or eight. One minute you can whizz around and do everything, and the next minute that’s it, you’re completely constrained by two wheels.

I also met a young man who was a bit older and, I have to say, probably a little bit more chippy, because teenage hormones were raging around his body, and he was finding it really tough. He was in a wheelchair and he was clutching a rugby ball and talking about various things, but he said that his life is really tough and he can’t join in with this friends, he can’t go out on trips and all the rest of it, and I just thought, ‘Wow, that really brings it home. This is a life-experience limiting illness/condition/disease.’ And that’s the issue, because a lot of these young kids, if they get support—and one of the big supports that they need and they cannot get and which isn’t available is physiotherapy and occupational therapy and psychotherapy that’s specifically targets the kinds of experiences that they are going through.

I had a long chat as well with Aimee’s father, and he said that he could cope, albeit unwillingly, with having to come up to Cardiff and deal with the adult rheumatologist and so on, but what he really wanted to be able to do was to have near their home in Haverfordwest, trained physiotherapists who could help someone like Aimee to cope with what she’s doing, to make her as strong as possible, to give her the best chance of going through this awful condition, and hopefully emerging out of it the other side as a young adult being the absolute best that she can possibly be. He’s asked Withybush hospital and Glangwili and there’s a real reluctance because they don’t have the staff, they don’t have the training, they don’t have the knowledge, they don’t have the skills. I met with the chief executive, and it was one of the things that we raised, because Aimee, the young man that I met and another young man that I met in my surgery—they all have that absolute right to have those kind of services. If I break my arm and I want physio, I expect to be able to deal with someone who knows how to help me get that strength back.

So, much of this debate is centred on having a centre of excellence, which we absolutely need in Wales, based somewhere sensible where people can get to it, with a targeted paediatric specialist in charge. But it doesn’t stop there. I think that’s the heart of the spider. The legs that go out all through Wales must have all these support services. We must have the occupational therapists, we must have the physiotherapists, and we must have the psychological therapists, because the young man who came to see me in my constituency office was just very unhappy, very down about what was happening to him, very down about his experience, and he couldn’t get the mental health support that he needed. So, it’s a whole range—these people are not just a person with a problem; it’s a complex issue. And I think it must be very hard to be suffering from something that can be so different on a day-to-day basis, and it must really upset the rhythms of your day. So, I would like to plead, Cabinet Secretary, for you to have a look at this whole area, to look at building a centre of excellence. We have the children’s hospital. This could be an absolutely great base to start from and actually put somebody into there who can look after south Wales, and then make plans for how we look after north Wales as well, of course, because children up there are having to travel across borders and so on. So, we need to make sure that we can provide that to mitigate what is a deeply, deeply unpleasant condition.

Final comment: we’ve talked a lot about public health, we talk a lot about the time bomb of the future, we talk a lot about empowering the patient, empowering the carer, hearing their voice and letting people make informed choices. Without having the staff in place and those people being trained to help these people, they can’t do that, they can’t have a voice, and they can’t make informed choices, and that’s what, Cabinet Secretary, we’re asking you to consider putting in place. Thank you.

I’ll begin by talking about the experience of a young person, Kelly O’Keefe from Talsarnau in Gwynedd, who is in her 20s by now but who has been suffering from arthritis from a very early age, receiving treatment in Alder Hey Hospital in Liverpool—an excellent hospital, but that’s not the point in this context. Her parents had to take a day off work to take her to Liverpool, with appointments very early in the morning—sometimes at 9 o’clock in the morning—and she didn’t travel very well because of the arthritis. It would take days to get over the journey, very often. And the experience is one that has remained with her to this day.

On the assumption that we are considering that travelling over long distances for treatment is something that the NHS uses as a last resort—perhaps it’s unfair to make that assumption considering how many services have been outsourced to England in the past few years. But making that assumption, we do have to ask ourselves whether it’s possible, and how it would be possible, to have that specialist provision in Wales. What do we need for specialist services? Well, we need the patient numbers to begin with, and we can see that there is no problem with justifying that in south Wales, certainly. It is perhaps a little bit more problematic in north Wales, or at least if we accept potential users from areas in Chester or Shrewsbury, for example, which is what we would usually do. We should be developing services that can provide for those over the border as well, if that’s what’s needed to create that critical mass.

There is also something slightly strange about the difference between the population figures in Wales and the numbers at present identified as patients in the system. Wales is the only nation in the United Kingdom without a specialist paediatric rheumatology centre. Northern Ireland has a population of 1.8 million, compared to 3.1 million in Wales, and yet it’s Wales that doesn’t have a multidisciplinary service, as we’re asking for today. Scotland, with a population of 5.2 million, has two services of this kind. But when it comes to patient numbers, only 202 children were on the books, as it were, being treated in Cardiff, according to the 2014 figures. Now, if we consider that we believe that there are around 600 children with this condition in Wales, then the groups that represent and support this motion today expressed concern about this figure of 202, because it could mean either that children aren’t receiving a diagnosis or that their needs post-diagnosis aren’t being met in the way that they should be through having a multidisciplinary service.

We’ve seen before that, very often, when it comes to specialist provision, demand for it is very often underestimated by health officials who are, it appears to me, very willing to see England as the specialist provider—the default provider. The perinatal unit for mothers and babies that we’ve heard about is another example of the demand and the need being underestimated when assessing whether a unit should be closed or not. We also note that a lack of data is a problem throughout the NHS. Much of the data that we need aren’t available or aren’t being shared, and it’s as if institutions are planning for what they can close or move somewhere else, rather than for what they can create.

It’s no secret that this motion has been put forward and has been inspired because of the advocacy work done by several groups representing patients who require better services. We hope that we will receive a positive response from this Government as a result of that. But I do want to ask this question: what about those conditions that don’t have the same kind of efficient and effective advocacy on behalf of patients? We can’t be content with that piecemeal provision for those conditions. There is a wider matter here with regard to assumptions about Wales by NHS managers, it appears to me, which means that they don’t see it as the default option to try to provide specialist services here, or to attract patients from England when that would be required to create a critical mass. As a result, this won’t be the last that we see of this kind of debate.

Kelly O’Keefe’s experience speaks volumes, I believe. It speaks also, because of the lack of services in north Wales, about the lack of support services and supporting services stemming from that. Because there wasn’t a service, there were no support groups available in north Wales, and that also makes the experience, for her and her family, even harder. It’s clear to me that the children of Wales deserve better, and I’m very pleased to be able to support this motion today.

I’m pleased to be co-sponsoring this motion before us today and I thank David Melding for bringing about this debate, which is very important. It is unacceptable that Wales is the only home nation without a specialist paediatric rheumatology service or a dedicated multidisciplinary team. As a result, children in Wales who suffer from juvenile idiopathic arthritis, juvenile onset systemic lupus erythematosus, vasculitis, juvenile idiopathic osteoporosis, fibromyalgia, and around 200 other conditions, are left without specialist care. Thousands of children from across south Wales are forced to rely on a substandard service provided part time by an adult rheumatology specialist without the backup of nurse specialists, physios, and occupational therapists, and some children have to travel to Bristol or Birmingham for treatment.

Last week, at an event to highlight this issue, I met an incredibly brave young lady who suffers from juvenile idiopathic arthritis. Aimee is eight years old, and brought home to me the real challenges she and her family face as a result of her condition and the fact that, when the current rheumatologist retires, in just a few years, she will have no specialist care. Aimee has spent the majority of her young life in pain, with stiff and swollen joints. Her arthritis has limited her childhood as she is often unable to do the things that many young people take for granted. When this happens, Aimee uses a wheelchair. Her father Darren explains she is sometimes teased or even bullied in school when she uses her chair. Her condition has had an impact on her education as she has to miss school on occasions, and it has affected the rest of the family. Without proper treatment, there is a risk she could develop lifelong disabilities, so this disease is not only robbing Aimee of her childhood but could also impact or limit her adulthood. Despite all of this, she continues to brighten the world with her smile.

Aimee, unfortunately, is not alone. There are hundreds of children in south Wales living with this terrible autoimmune condition, for which there is no cure. These young people deserve a dedicated multidisciplinary paediatric rheumatology service. Such a service is vital in achieving remission of arthritis, maintaining the disease’s remission, preserving normal development, and minimising the risk of lifelong disability. NHS England states that there should be one consultant paediatric rheumatologist, two nurse specialists, one physiotherapist, and one occupational therapist for every 1 million people. We have around 2 million people living in south Wales yet we have a quarter whole-time equivalent adult rheumatologist without a formal clinical network or multidisciplinary team. This is unacceptable. We are letting down Aimee and thousands of children like her.

I urge my fellow Assembly Members to join us in calling for the Welsh Government to deliver a full multidisciplinary paediatric rheumatology service in south Wales and to improve the provision of services in north Wales. We owe it to Aimee, we owe it to the thousands of children suffering from rheumatic conditions, and we owe it to those children yet to receive a diagnosis. Please support this motion. Thank you. Diolch yn fawr.

Thank you very much. Before I call the next speaker, if you’re using your iPads or your iPhones, which you’re entitled to, could you please make sure that they are on silent? The constant pinging is starting to get on my nerves, and I’m sure you wouldn’t want me to start to throw a little bit of a tantrum from the chair. So, if you are checking, can you just check them please? It probably will affect the translation and the broadcasting. Joyce Watson.

Diolch, Dirprwy Lywydd. The first thing I’d like to do is to thank David Melding for creating an opportunity for me and, as he said, 50 per cent of the Assembly Members, to meet two fantastic families and their very courageous children, and also for creating an opportunity for us here today to recognise their condition and to ask for some support in that regard. That event was called ‘Too Young for Arthritis?’, and it would be in all of our minds, if we were talking about rheumatology, we wouldn’t necessarily be putting that with children. So, it came as a real eye-opener, I think, to most people, to actually meet young people and to talk about paediatric rheumatology. I was certainly—I will put my hands up to being one of those people.

They are living with a condition and receiving treatment for juvenile idiopathic arthritis, and I will refer to it as JIA from here on. Many people have spoken about Aimee, and all of us met her, but I also met Aaron, who was 12 years old, and both of them had travelled up from Pembrokeshire, from my area. And they did share their stories and their experiences very willingly and, I feel, very bravely with all of us. One of the things that I would like to add was the social isolation that they also talked about with me and the fact that, on a good day, they couldn’t actually access anywhere where they could socialise with other people very easily, due to access and due to understanding that maybe they could join a club this week, but not go to it next week. The inconsistencies of their day-to-day life and the interruption of their pattern within school, within their social life, and with their own family life, couldn’t actually be overstated, and I wanted to bring that to the table.

As somebody who travels from Pembrokeshire to Cardiff every single week, just about, and back home, I understand that it is a long journey and, mostly, it will take two hours, and sometimes it’ll take a lot longer, depending on the time of day. But for somebody who is suffering such a painful condition to have to undertake that journey on a sometimes fairly frequent basis, the pain and the discomfort must be something very difficult to bear indeed. I listened to them, as we all did, and they were asking for a specialist tertiary centre for paediatric rheumatology in Cardiff’s children’s hospital. As a consequence, and hoping that that might happen, they were looking forward to a satellite centre or hub where they might be able then to receive some treatment closer to home when that is appropriate. And they know and recognise that that would only be possible if there was that specialist tertiary centre opened in the first place.

Many here have said today that there isn’t such a service available to those individuals in Wales, and I really feel we need to look at providing that treatment here. Of course, around that, we would need some specialist multidisciplinary teams that would include doctors, nurses, occupational therapists, and physiotherapists, and I think, again, that I would call for that support. It cannot be understated that, if you live with a condition like this and you have to travel to access that treatment, it has a really serious impact on your day-to-day life, but, when you add youth to it, and the expectation that, as a young person, you would live your life, I think that we all here need to do all we can to improve their lot.

One of the pieces of advice my highly esteemed predecessor as Assembly Member for Caerphilly, Jeff Cuthbert, gave me was to always take the opportunity in debate to raise the issues and concerns of your constituents, and therefore this is a very timely opportunity to do that. My knowledge of this dreadful disease came about as a result of meeting a constituent, Glyn Davies, who’s volunteered on behalf of Arthritis Care for 15 years. He suffers from arthritis himself and he’s run a range of courses for people of all ages who have been affected by arthritis, on activities such as exercise, employment, finance, welfare, and pain management. He’s talked to me about the importance of transition from paediatric to adult services, and it’s something that has been touched upon—I think Rhun touched upon that in some of the contributions he made. The role of volunteers, therefore, is very, very important, but I’m mindful that the motion concentrates on the issue of arthritis in children, which is something that is less commonly understood, I think—certainly in the dialogue I’ve had with other constituents.

Earlier today, my office was contacted by my constituent Alison Haines, of Caerphilly. Alison’s son has JIA, and is prone to flare-ups. At present, the availability of part-time support services means that access to care can take two to three days. Alison feels that her son’s flare-ups will be brought under better control if full access to treatment and advice was more widely available on a regular basis. What she told me was her son currently receives treatment from two different sites, the Noah’s Ark Children’s Hospital for Wales in Cardiff, and the Royal Gwent Hospital in Newport. The problem is that his appointments are on separate days, meaning his education suffers due to more time off school. If a range of paediatric rheumatology services could be provided in one dedicated place, then this would reduce the impact on his school attendance, and also reduce the strain put upon the whole family. Clearly, the establishment of a tertiary, multidisciplinary paediatric rheumatology service in south Wales would be, as Julie Morgan said, of significant benefit to people just like Alison’s son, helping him manage his condition more effectively and providing a great deal of support for his family.

I signed up as a supporter to the motion. I wanted to understand fully the implications of points 4 and 5, awaiting the WHSSC review and the implications that has, then, for the decision on paediatric services. I think I was struck a little bit by Rhun ap Iorwerth’s contribution that said, ‘Well, we need a strategy. We need to think strategically about it. We need to base this on evidence’, and the evidence should therefore be provided by that WHSSC review. And, therefore, in conclusion, I would be grateful if the Cabinet Secretary would agree to give that concept of a multidisciplinary rheumatology paediatric service consideration, pending the outcome of that WHSSC review.

I had also the fortune to meet with representatives of the British Society for Rheumatology and the National Rheumatoid Arthritis Society in the Pierhead building recently, and I thank David Melding for bringing forward this debate. I was struck by the points made to me, and that, with a population of over 2 million and over 400,000 children in south Wales, there is a strong case to be made for a full multidisciplinary paediatric rheumatology service. Inevitably, with this historic lack of current provision in Wales, many children are travelling real distances to access paediatric rheumatology, with children travelling to centres in England, such as Bristol and Birmingham. Nobody can believe that this is ideal or necessary, let alone desired.

Earlier this year, the Welsh Health Specialised Services Committee confirmed that they will be undertaking, as has been said by many Members, a comprehensive review of paediatric specialised services for the Welsh population, and that the review will include that assessment of paediatric rheumatology, and I very much welcome this move. It is important that we do base our decision on evidence. This is the way that has been said that we can ensure the precious resources for the national health service in Wales, which are not finite, can be properly targeted to meet the cascading and ever-widening needs of the Welsh nation.

Only last night, BBC Wales’s flagship news show, ‘Wales Today’, highlighted this fundamental issue, and, with the growth in diabetes, Alzheimer’s and other conditions, an interim review of health and social care, chaired by Dr Ruth Hussey, has highlighted the Welsh national health service’s funding challenges moving forward in Wales.

The Cabinet Secretary for health, Vaughan Gething AM, yesterday said in this very Chamber that he expected the review and the Welsh Government’s response to it to form the direction of travel for the next decade. Professor Sir Mansel Aylward, a review panel member, stated that the Welsh NHS needs to meet the demands of the people of Wales like Aneurin Bevan advocated at the very beginning.

I sincerely hope and ask that the clear demand for paediatric rheumatology services in Wales can be met with a tailored response that the Welsh Health Specialised Services Committee can recommend and, as such, I will strongly support such an outcome.

Thank you very much. I now call the Cabinet Secretary for Health, Well-Being and Sport, Vaughan Gething.

Thank you, Deputy Presiding Officer. I’d like to begin by thanking Members for their contributions to this debate. As ever, these individual Member debates are a good opportunity for issues that would not otherwise receive a national profile to do so. We are talking today about a painful condition, as set out by David Melding—one that is not perhaps properly understood. That was referred to by many other Members. It’s often that human experience of meeting someone with a condition that triggers a particular interest, not just in one Member but in a range of us, to understand that, actually, we almost all probably have constituents who are affected.

The Government will abstain today and not support the specific wording of the motion. We do recognise that paediatric rheumatology services need to be reviewed, and I’ll outline in my contribution what is already taking place.

Yesterday, as has been referred to, in the statement regarding the parliamentary review, we rehearsed some of our challenges in providing a service fit to meet the challenges of the future, and this service is a good example of where we recognise and need to understand the level of need and then take a practical and evidence-based approach to improving services. It may also require the NHS family to work across health board boundaries and potentially national boundaries in providing the right configuration for all of the services.

Now, we don’t have, as the motion recognises, a formally designated paediatric rheumatology centre. In practice, a tertiary service is provided at the University Hospital of Wales, as has been referred to several times in the debate. Actually, a referral from the University Hospital of Wales to an alternative specialist service is sometimes necessary at present as well. As has been mentioned, all referrals of this nature are reviewed by a consultant rheumatologist who acts as a clinical gatekeeper, and he is authorised to refer and commit Welsh Health Specialised Services Committee—or WHSSC—funding for treatment at those specialist centres outside Wales. So, we do already have in place, for south and mid Wales, service level agreements in place with Birmingham, Bristol and Great Ormond Street. But I recognise that the current arrangements do not provide for the full multidisciplinary team that should be in place in a designated paediatric rheumatology centre. I also recognise the points that were made about travelling distances, which I will come back to later on.

The motion largely refers to the number of patients in Wales—in particular, the number of patients in south Wales. In north Wales, there are outreach clinics provided by the health board, and patients do attend Alder Hey for their paediatric services. Before today, significant concerns hadn’t been raised with us about the quality or the reach of those services for citizens in north Wales. In fact, the third sector hadn’t raised challenges about that, and there are a range of support groups that exist in north Wales as well, but I’ll reflect on comments made by Members in the Chamber and have that discussion with service users and the third sector too.

There are three streams of work that I want to refer to to inform the future approach. The first is the comprehensive review of specialist paediatric services by WHSSC, as referred to in the motion and in the debate today. I know that WHSSC have already been in touch with the third sector, in particular the National Rheumatoid Arthritis Society, as part of that review. It is important to me that the third sector and the voice of the service user is a real feature in that review that takes place. I do welcome the review and I look forward to the results that can inform NHS thinking on both the potential but also then the practical considerations to be addressed around specialist service provision in Wales.

The second area of work is the review of the snappily titled commissioning directive for arthritis and chronic musculoskeletal conditions. If you don’t mind, I’ll refer to it as the directive. Now, ultimately, of course, the direct responsibility for delivering improvements for musculoskeletal conditions, including paediatric rheumatology services, rests with health boards, but they do so in line with this commissioning directive. Now, we are currently in the process of updating the directive. It’s nearly 10 years old at present. The broad aim is to move towards a greater focus on helping people of all ages to develop skills to enable them to manage their conditions and, where appropriate, increase their ability to stay in work and live the lives they want to live. Obviously, for children and young people, living the lives they want to live, as has been said by a number of Members in this debate, includes normal social interactions, the ability to go to school, and a range of other things.

A project steering group has been convened to oversee that work, and it consists of both clinical experts from each health board in Wales and third sector representatives. Currently that’s the National Osteoporosis Society and Arthritis Care Wales, and individual service users. An initial meeting of that group has already taken place, and the next meeting is scheduled for the first week in August.

The third area of work has come from a specific area that I have already asked for, and as a result of my request the interim managing director and the acting medical director of WHSSC are due to meet with Arthritis Care Wales and the consultant who manages the tertiary rheumatology service at UHW to discuss a way forward. Representatives of the National Rheumatoid Arthritis Society and Arthritis Care Wales will be present at that meeting, which is due to take place within the next week.

I hope that provides some assurance to Members that the Welsh Government recognises the reality that our current provision and service model could be improved, and we’re committed to doing so, because I want to see all three strands of that work drawn together to provide us with practical steps forward. But if I may go back—

Will you take an intervention?

Yes.

I’m very grateful to you, Cabinet Secretary, for taking a quick intervention. I’m delighted to hear the strands of work that you’re bringing together. Could you just quickly touch upon the case of undiagnosed young people? Because this deals with those who we know have it, and about them getting the service. I think a number of people who took part in this debate raised the numbers of children who have not yet even got that far, because there isn’t knowledge out there in the field amongst the GPs and other professionals. Perhaps you can just tell us how you can improve that.

I was going to touch on some of that in the next part of my contribution, but I will refer back to some of the conversations we had yesterday with the parliamentary review statement, and the reference to what could and should be local, what’s the responsibility of health boards individually and acting together, and where should there be a central guiding hand directing and requiring the service to do something. That would include, in this area, the debate and the discussion about the number of specialist centres we could or should have, what the evidence base is for that, but also the wider service model from community to specialist. That includes diagnosis, awareness and training, but then how much of that service you could and should provide locally and closer to home, and then the acceptance that, whenever you have a specialist centre, people will travel. Whether it’s located in Cardiff, Swansea, Carmarthen or wherever a specialist centre is, for lots of people that will require significant travelling distance to get to that specialist centre for the care that they only could have and should have within that setting. At present, given the position of Cardiff—and a number of Members have made a bid today for Cardiff to be a formal paediatric rheumatology centre with a multidisciplinary team—that would still require people to travel a long distance, and to have the right group of staff in place to provide the care.

I think there’s a challenge here about commissioning services within Wales, commissioning services across the border in England, where that’s necessary, or where that’s the right thing to do. But also, I’d still want to have a more open conversation with colleagues in England about commissioning services in Wales that would also take in and deliver on the needs of patients who currently live in England. There are some flows that already exist that could and should exist in more specialist services, I believe, as well. But I think rather than me determining the model of service provision in a single debate today, it’s important that we care about the need to resolve the questions about the service model—about the balance between community and specialist provision. That, of course, includes questions raised about those points and about the specialist multidisciplinary team that I recognise we don’t have.

So, I will take proper account of the WHSSC review, and I will then either make a choice with the service—or I hope the service will make its own choice, actually, because I think this is an area where there should not have to be central direction from myself. But I hope that, in indicating that I will take seriously the recommendations for service improvement, that meets the test set for me by Hefin David. I’m happy to give a clear indication about a direction to take place, and of course I will report back to Assembly Members in due course.

Thank you very much. I call on Dai Lloyd to reply to the debate.

Thank you very much, Deputy Presiding Officer. It’s a pleasure to respond to this debate, which has been an excellent debate, and I congratulate David Melding first of all for bringing it all together and for arranging that event a fortnight ago in the Pierhead building, where we met those families who were suffering.

Of course, as a GP with over 35 years’ experience in Swansea, over the years, I’ve met a number of families who have a young person among them suffering arthritis at a very young ages, and it can be a very serious condition, as we’ve heard. And relatively common ailments that are serious in their impact do deserve to be treated in a specialist regional centre, because they are unusual conditions that require different treatments and where all the specialists dealing with those conditions should be located in a central location—a multidisciplinary centre in the true meaning of those words.

All of the medical evidence that has come to hand over the years would support such a development, so that we get the best quality treatment for these rare conditions. We’ve heard the strong arguments in favour of establishing specialist paediatric rheumatology services, and I agree entirely. And the quality of this afternoon’s debate deserves that, too.

I, too, have met a number of specialists working in this area and have spoken to families about the need for these developments—such as Lisa Evans and her daughter Bethan in my region who has this condition—and the need to establish a specialist service in this area.

In turning to the contributions, I congratulate David Melding on outlining in his usual mature manner the points in favour of creating a specialist paediatric rheumatology centre and on telling us the story of Aimee, who was mentioned more than once during the debate. Julie Morgan again gave us the history of another child and the problems that can develop with the eyes and eyesight—it’s not just a matter of joints and bones. And she emphasised the need for early treatment to avoid the impacts of the condition, and arthritis that can have grave effects in the long term, which means that children lose a lot of school as a result.

I congratulate Angela Burns on her contribution, too, outlining the experiences of those who are suffering JIA, and emphasising this element of this need for the multidisciplinary team: physiotherapists, occupational therapists and psychotherapists. Likewise, Rhun mentioned the individual experiences of a family and the importance of developing this expertise within Wales. We can do this.

I also thank Caroline Jones, Joyce Watson, Hefin David and Rhianon Passmore for their wise and mature contributions this afternoon. I also thank the Cabinet Secretary. Yes, the background to all of this, as the Cabinet Secretary mentioned, is the Ruth Hussey report, the interim report, which was published yesterday, and there is a significant challenge for the health service there to change.

But there is also a significant challenge for each and every one of us to change. I don’t think that it is sufficient now just to think that something is a good idea and then to refer it to some commission to come up with a final solution in many years’ time; we have to start to take action now. And that’s what the interim report written by Ruth Hussey emphasises: the need to make far-reaching decisions now and to have the courage to implement those.

We’ve heard from the Cabinet Secretary what WHSSC is doing and about the importance of what patients think of the service at the moment. Well, we’ve heard this afternoon what the patients’ view is: they want to see a specialist paediatric rheumatology service now. Wales is the only nation that doesn’t have that specialist service, and I would urge the Cabinet Secretary to come to the same conclusion as everyone else in this Chamber this afternoon.

So, we need these changes now as a matter of urgency, and, of course, that’s what Ruth Hussey’s report anticipates. A change will have to come. Things are moving out of our regional general hospitals and into the community is all very well and good. We’ll do more in the community, we want to do more in the community, and we want to do more in the community, and we deserve the funding to do more in the community, and fewer of the day-to-day issues will be covered in our DGHs, but we still need these specialist tertiary centres to do that stuff that can only be done in those specialist centres. Yes, do more in the community, but we also need more specialist centres here in Wales to serve our people.

We’ve heard the evidence. We’ve heard from a number of people this afternoon. We’ve also had direct evidence from patients and their families and those suffering, and the time for action is now. Thank you.

Thank you very much. The proposal is to agree the motion. Does any Member object? [Objection] Therefore, we defer voting under this item until voting time.

Voting deferred until voting time.